APA to drop “Asperger’s syndrome” from its diagnostic manual

It's the American Psychiatric Association's first major rewrite in 20 years.

The American Psychiatric Association will publish a new diagnostic manual in May 2013 and this edition will contain the APA's first major rewrites in 20 years according to the Associated Press. A group of psychiatric board trustees met Saturday outside of Washington, DC to approve the changes.

Perhaps the most notable change: the terminology "Asperger's disorder" will no longer be included. The revised manual will instead include the new term "autism spectrum disorder." According to the AP, this terminology is already seen in the field; what had been recognized as Asperger's will be incorporated under this umbrella diagnosis. Autism spectrum disorder will cover a range of individuals, from mild forms to kids with severe autism who often don't talk or interact with others.

Dr. David Kupfer, chair of the task force in charge of manual revisions and a psychiatry professor at the University of Pittsburgh, told the AP the aim of the revisions was not to change the number of diagnosed mental illnesses. Rather, he says, the revisions should ensure affected children and adults receive a more accurate diagnosis and then more appropriate treatment.

We can't be certain without seeing the potential text, but Ars staffers with experience in these areas believe the dropping of the Asperger's label reflects an adaptation to current clinical procedure—it's simply a new label that won't cause any change in practice.

In theory, the revised manual will now closely reflect the subtleties and overlap between dyslexia, Autism, and ADHD, as dyslexia and other learning disorders will remain distinct categories, despite some overlap with autism spectrum. For instance, people with dyslexia can often have as much trouble focusing on tasks as those with autism, but not for the same reasons—instead, it's because dyslexics can't read the instructions. The distinctions among a diagnosis of ADHD, dyslexia, or both hinges on very careful testing.

The manual's importance runs deep, as many insurance entities use it to decide what treatments to fund and a number of schools refer to it for inclusion in special education. Other notable edits to the APA's manual include severe recurring temper tantrums coming under a new diagnosis called "disruptive mood dysregulation disorder" (DMDD). The controversial "gender identity disorder"—which many viewed as stigmatizing and incorrectly labeled as a disorder—was also dropped. The manual will now include the new "gender dysphoria," meaning emotional distress over one's gender.

96 Reader Comments

This is a good thing. Moving away from black and white thinking should allow them to cast a wider net, treating more people. One problem that can happen with discrete categories is that if a patient doesn't get the diagnosis, they don't get help. This is despite the fact that they could have quite severe symptoms, just not across the board. This leads to the situation where some patients might exaggerate so they can get treated, while others fall through the cracks.

I have a number of friends who work with the Asperger's population and they are all very concerned about this change.

The first problem is that, even though AS and autism are related, clinicians *do* still make a distinction between the two. And although there's a lot we don't understand yet, it's more complicated than the "AS is just mild autism" that a lot of people think. The worry is that the axing of the AS diagnosis will result in folks not getting the treatment that they need because they'll all be lumped in together diagnostically.

The other problem to keep in mind is that state funding for mental health treatment is tied to APA diagnostic criteria. The people who provide services specifically to the AS segment of the population already have a hard time getting financial support, and they reasonably expect a lot more hassles from insurance claims and government grants when the subset of the autistic spectrum that they service is no longer officially recognized as a discrete diagnosis.

That is concerning. I'm coming at it from the opposite side, someone with PDD-NOS, who has trouble getting treatment because I don't meet the criteria for Aspergers. I went to a university medical center to get my diagnosis, so it was accurate, and I believe they did a thorough job. The problem is, PDD-NOS doesn't really qualify for anything, and I have severe anxiety issues that can make it difficult to work. I've managed to hold down a full-time job my entire adult life doing challenging work, but suffer quite a bit of emotional and mental health issues privately. I'm hoping that casting a wider net will mean that folks who didn't get the diagnosis of Aspergers will get better treatment. I also hope that it will encourage more people that are on the edge to come forward, which I think will foster healthier attitudes about autism in general, as people will realize that these traits can be a serious strength.

There is also the issue that people that are high functioning/PDD-NOS, can be so good at covering up their issues that they can have a hard time being accepted. I have a great game face that I can put on in social situations. It's exhausting, but I can do it. Usually people don't realize that I'm absolutely serious about being on the spectrum until they've known me for a month or two, and realize that I can be completely oblivious to normal social cues, and that I have a tough time changing subjects, etc. They are subtle flaws that can really make it hard to connect with people.

TygerFish wrote:

I have a number of friends who work with the Asperger's population and they are all very concerned about this change.

The first problem is that, even though AS and autism are related, clinicians *do* still make a distinction between the two. And although there's a lot we don't understand yet, it's more complicated than the "AS is just mild autism" that a lot of people think. The worry is that the axing of the AS diagnosis will result in folks not getting the treatment that they need because they'll all be lumped in together diagnostically.

The other problem to keep in mind is that state funding for mental health treatment is tied to APA diagnostic criteria. The people who provide services specifically to the AS segment of the population already have a hard time getting financial support, and they reasonably expect a lot more hassles from insurance claims and government grants when the subset of the autistic spectrum that they service is no longer officially recognized as a discrete diagnosis.

All of the controversy over the DSM is just another indication of how deeply unsatisfying the sciences of psychology & psychiatry are at the present time. Nearly all of these issues are political in nature, not technical -- which would be fine if the science was settled which it obviously is not (ASD, case in point). Everybody's just maneuvering to get their piece of the pie.

That said, pulling Asperger's under the ASD umbrella is the right thing to do from a technical point of view. I suspect most of the fear about how that will affect Medicaid funding, etc. is overblown.

That is concerning. I'm coming at it from the opposite side, someone with PDD-NOS, who has trouble getting treatment because I don't meet the criteria for Aspergers. I went to a university medical center to get my diagnosis, so it was accurate, and I believe they did a thorough job. The problem is, PDD-NOS doesn't really qualify for anything, and I have severe anxiety issues that can make it difficult to work. I've managed to hold down a full-time job my entire adult life doing challenging work, but suffer quite a bit of emotional and mental health issues privately. I'm hoping that casting a wider net will mean that folks who didn't get the diagnosis of Aspergers will get better treatment. I also hope that it will encourage more people that are on the edge to come forward, which I think will foster healthier attitudes about autism in general, as people will realize that these traits can be a serious strength.

TygerFish wrote:

I have a number of friends who work with the Asperger's population and they are all very concerned about this change.

The first problem is that, even though AS and autism are related, clinicians *do* still make a distinction between the two. And although there's a lot we don't understand yet, it's more complicated than the "AS is just mild autism" that a lot of people think. The worry is that the axing of the AS diagnosis will result in folks not getting the treatment that they need because they'll all be lumped in together diagnostically.

The other problem to keep in mind is that state funding for mental health treatment is tied to APA diagnostic criteria. The people who provide services specifically to the AS segment of the population already have a hard time getting financial support, and they reasonably expect a lot more hassles from insurance claims and government grants when the subset of the autistic spectrum that they service is no longer officially recognized as a discrete diagnosis.

Maybe now that ASD is actually in the diagnostic manual, the funding situation will change. Based on this article, ASD wasn't actually in the manual. I can see why insurance wouldn't want to cover what would technically be a "made up" diagnosis, but now that its in the book... well now its because they don't like parting with your money.

I'm one of those rare individuals with Aspergers Syndrome, diagnosed, with a child with Autistic Disorder. While there are similarities around the edges, Autistic Disorder and AS are very very different in both outcomes and treatment needs.

I don't know how this will affect my son, but casting a wider net to include more people who need different help and treatment into his category will likely mean less resources for him as he'll have to share those resources and his population is the one with the very greatest need. Therefore, I'm hopeful this won't hurt him but I'm skeptical.

I for one welcome these changes, having suffered all my life from very annoying dyslexia I am glad the changes are being done. I was miss-diagnosed as a child, to the extent that I didn't learn to read until I was nearly a teenager, never getting the help I needed and therefore never learning algebra in my school years. Having gone to a top University helped me, since they finally diagnosed me. But I lost many years and in fact never really fully got back on track on my career. These changes IMO will help make what happened to me less likely.

It's worse than that, specific treatments just don't exist, at least not for PDD-NOS adults. Not only is the insurance money not there, but the treatments themselves aren't there. It's been neglected quite a bit in the adult population. I get treated for anxiety/depression, but there is absolutely no insight applied to my autism spectrum symptoms, despite the fact that much of my psych issues are caused by it. They just haven't done enough studies on adults, and it's a complete non-priority in comparison to all the effort put into helping kids.

These days their model is still flawed, in the sense that many believe you don't get better. The fact is, most of the people I've talked to online DO get better. So, if you took into account my whole history, I think it's Aspergers, as I was much worse when I was younger. Another problem is, when I was a child, there wasn't much of a concept of Aspergers in the U.S. The criteria used to screen me at age 9 were looking for much more severe criteria, and missed a lot of very obvious issues that I had. Back then you either had autism or were normal, with nothing in between. So, I fell through the cracks the first time I was screened at age 9. (Basically I would space out in class and miss large chunks of time "daydreaming").

mcmcc wrote:

composer777 wrote:

I'm coming at it from the opposite side, someone with PDD-NOS, who has trouble getting treatment because I don't meet the criteria for Aspergers.

Honest question: What treatments are being denied as a result of your (lack of) diagnosis?

I'm surprised Ars missed there but the arguably larger and IMHO more important discussion that was had surrounding the DSM-V was the inclusion of Internet Addiction under behavioral addictions. Compulsive gambling is currently the only behavioral addiction, and that was only recognized as part of the DSM-IV.

Hopefully the study of internet addiction will be advanced based on the discussions that led to it not being recognized (namely there wasn't enough research.) But some recognition of the fact that it wasn't included on Ars would be nice

Is it just me, or is the article's digression about the relationship between autism, ADHD, and dyslexia really odd? Of course they remain identified as separate disorders--they're completely different disabilities, with different causes, effects, and treatments!

It's like writing about a manual of physical disabilities, "broken foot, stroke, and decapitation remain separate disabilities, even though they all can result in reduced mobility."

I also think this is a good thing. I have a son who has been diagnosed with autism. In Sweden (where I live) we usually work with three diagnoses: autism, asperger and autism-resembling syndrome. Recently, my son's condition was informally termed "high-functioning" autism, which sounds good but doesn't really mean anything concrete, at least nothing that I as a layman can appreciate. And I know of parents whose children have both ADD and/or Asperger and/or autism-resembling symptoms or are moving between a variety of syndromes, and noone seems to be really sure which is the most correct one. All in all, the distinctions seems to be confusing more than anything else. ASD is a good way of just avoiding this relatively fruitless discussion.

I think moving from Asperger etc to an "ASD" umbrella is a natural part of the transition where the diagnosis changes from being a categorization to a tool that can help your child, whatever the actual diagnosis. I am unsure if my son fulfills the criteria for being typically autistic, but that doesn't really matter. What I do know is that he is helped a lot by the tools and methods offered under the ASD umbrella, and so are children who have Asperger.

I for one welcome these changes, having suffered all my life from very annoying dyslexia I am glad the changes are being done. I was miss-diagnosed as a child, to the extent that I didn't learn to read until I was nearly a teenager, never getting the help I needed and therefore never learning algebra in my school years. Having gone to a top University helped me, since they finally diagnosed me. But I lost many years and in fact never really fully got back on track on my career. These changes IMO will help make what happened to me less likely.

In no way is this meant to sound snarky or rude, but I'm honestly curious: how did you end up matriculating at a "top University" if you didn't learn to read until you were a teen? Or learn algebra? I can't imagine either of those issues helped with your grades.

Whatever the case, I'm glad you're doing well now. If you're a great success story - which your comment suggests - you should share that story with the world.

My personal favourite: "binge eating disorder", which entails three or more of the following:

-overeating 12 times in 3 months-eating much more rapidly than normal-eating until feeling uncomfortably full-eating large amounts of food when not feeling physically hungry-eating alone because of feeling embarrassed by how much one is eating-feeling disgusted with oneself, depressed, or very guilty afterward

A weekly Sunday roast and you're well on your way to meeting the criteria for having a disease. 20 years well spent there.

It's worse than that, specific treatments just don't exist, at least not for PDD-NOS adults. Not only is the insurance money not there, but the treatments themselves aren't there. It's been neglected quite a bit in the adult population. I get treated for anxiety/depression, but there is absolutely no insight applied to my autism spectrum symptoms, despite the fact that much of my psych issues are caused by it. They just haven't done enough studies on adults, and it's a complete non-priority in comparison to all the effort put into helping kids.

Well, as a parent of young PDD-NOS children, I can tell you the treatments available for young children aren't exactly awe-inspiring either.

The fact is, the book of ASD knowledge is very thin. That the DSM takes all of these related disorders and puts them all into small/medium/large buckets is good indicator of how little is understood.

I question how labeling something under a broader umbrella will make for a more accurate diagnosis. Clarity doesn't seem to be increased here. Also bringing things more directly under the Autism spectrum will be met w/claims that the definition of Autism is ballooning, explaining why the number of Autism cases have been increasing.

I have a son who was diagnosed with PDD-NOS about three years ago. We have had some issues getting him the proper help. It wasn't until this year that I feel that he is finally getting the help he needs. (He's currently in the first grade).

Any changes to the spectrum do concern me, because I can see this going in either direction. That of benefiting him, or the opposite where it might make it more difficult in getting him proper help he needs.

Well, great. Instead of saying, "Whoops, Aspie moment," now I have to be all like, "Sorry, guys, I totally just went autism spectrum disorder there." It's bad enough being socially inept, now I have six extra syllables for my tongue to trip over...

Edit for the two downvoters: if you knew me in real life, you would understand that I was being completely sincere.

Maybe this will also help nuke some of the derogatory variations that get slung around too.

One can dream, right?

I'm far less optimistic. When you have the same Team PC Heterosexual Word Police™ constantly pounding on other heterosexuals for saying "that's gay" or "you're gay" to other hetersexuals*, but nearly all of them call people "retards" and "retarded" due to some ideological disagreement...

(*Seriously...I know many gay people and none of them give a rat's ass if one heterosexual calls another "gay." They are able-minded people who can and will stand up for themselves. "Retards" OTOH.... Gross hypocrisy.)

Is it just me, or is the article's digression about the relationship between autism, ADHD, and dyslexia really odd? Of course they remain identified as separate disorders--they're completely different disabilities, with different causes, effects, and treatments!

It's like writing about a manual of physical disabilities, "broken foot, stroke, and decapitation remain separate disabilities, even though they all can result in reduced mobility."

I think it's more along the lines of broken toe, broken foot, and broken ankle. All basically mean you have a problem with your foot but what specific problem it is remains to be seen with more testing, however they all fall under the umbrella of a 'broken bone'. And after some testing it may be found to be just a sprain which results in a completely different treatment.

I think categorizing similar disorders under a general heading and differentiating beneath that heading as to severity is the right way to go in helping to classify the various disorders that the human condition is subject to. In the case of Asperger's (this is just an example) it could present as a mid or severe form of autism spectrum disorder which can include other disorders that are very similar to Asperger's. In my opinion this is what the APA is trying to accomplish by eliminating the specific diagnosis and moving to a general one.

I question how labeling something under a broader umbrella will make for a more accurate diagnosis. Clarity doesn't seem to be increased here. Also bringing things more directly under the Autism spectrum will be met w/claims that the definition of Autism is ballooning, explaining why the number of Autism cases have been increasing.

The problem is that the current diagnoses aren't clear either. We don't know what's causing it, even if there are many theories out there. Autism or Asperger are really just collections of disorders, ranging from speech inhibition to social handicaps to eating disorders to cognitive retardation to hyper-perceptiveness... and so on. Asperger children don't have speech problems or mental retardation, but neither all autistic kids do. And most of the disorders can be found in both groups.

Example: It seems like my son has moved from the "autism" label to the "high-functioning autism" label, which used to be synonymous with Asperger. But I'm not sure. There is no blood test or bone-marrow sample to know for sure.

What he do know is that there is a number of particular problems and handicaps, such as speech problems and social handicaps etc, that seem to accompany each other. And thankfully, these particular disorders we often DO know how to treat. Everything that means a greater focus on that, instead of trying to specify diagnoses that are largely overlapping, is a good thing.

A better analogy for the ASD umbrella might be to say "I know this person has either a broken toe (any of the 5), a broken foot (any part), a broken ankle, or a sprained ankle." The rationale for grouping all these things under the ASD heading is that they have similar symptoms, just like all the different physical diagnoses above would result in difficulty walking and pain when putting weight on that foot.

The good part of merging the diagnoses is it reflects our current lack of knowledge about where exactly one ends and the other begins. The state of our knowledge about the mechanisms behind the different ASD symptoms *is* still very primitive.

Where the ASD merging is problematic -- and the foot analogy holds here -- is that you treat a sprained ankle differently than you treat a broken toe. Completely merging AS and autism and PDD-NOS makes about as much sense as merging all the above foot injuries on the rationale that "foot hurts; can't walk normally" works for any of them.

If they asked me -- and they wouldn't; I was told by my friends in the field that the APA committee actively discouraged feedback on this decision -- a better approach would be to introduce ASD as an umbrella term and continue refining the differential diagnosis, but keep the individual categories intact for now as discrete options within that umbrella.

TheGreenMonkey wrote:

Louis XVI wrote:

Is it just me, or is the article's digression about the relationship between autism, ADHD, and dyslexia really odd? Of course they remain identified as separate disorders--they're completely different disabilities, with different causes, effects, and treatments!

It's like writing about a manual of physical disabilities, "broken foot, stroke, and decapitation remain separate disabilities, even though they all can result in reduced mobility."

I think it's more along the lines of broken toe, broken foot, and broken ankle. All basically mean you have a problem with your foot but what specific problem it is remains to be seen with more testing, however they all fall under the umbrella of a 'broken bone'. And after some testing it may be found to be just a sprain which results in a completely different treatment.

I think categorizing similar disorders under a general heading and differentiating beneath that heading as to severity is the right way to go in helping to classify the various disorders that the human condition is subject to. In the case of Asperger's (this is just an example) it could present as a mid or severe form of autism spectrum disorder which can include other disorders that are very similar to Asperger's. In my opinion this is what the APA is trying to accomplish by eliminating the specific diagnosis and moving to a general one.

I have a number of friends who work with the Asperger's population and they are all very concerned about this change.

The first problem is that, even though AS and autism are related, clinicians *do* still make a distinction between the two. And although there's a lot we don't understand yet, it's more complicated than the "AS is just mild autism" that a lot of people think. The worry is that the axing of the AS diagnosis will result in folks not getting the treatment that they need because they'll all be lumped in together diagnostically.

The other problem to keep in mind is that state funding for mental health treatment is tied to APA diagnostic criteria. The people who provide services specifically to the AS segment of the population already have a hard time getting financial support, and they reasonably expect a lot more hassles from insurance claims and government grants when the subset of the autistic spectrum that they service is no longer officially recognized as a discrete diagnosis.

This. This is what I am seriously worried about as a person with Asperger's myself.

I am worried that people will not get the proper things necessary for them to participate in society because everyone will be lumped under one diagnosis.Plus, whenever someone hears about autism, the head-banging boy wearing a helmet for his own protection automatically comes to mind.

ZippyDSMlee wrote:

Errrr don't we need sub groups to "autism spectrum disorder" in order to better treat people?

Also this is going to make send the anti vaccine people from mad to foaming mouth mad now more people will have "autism". *rolls eyes*

The anti-vaccination people have some very good points. In and of themselves in a normal person with a normal immune system, vaccinations do not cause autism. However, in people with certain metabolic disorders which are more common than previously believed, in people with certain genetic disorders, etc.? Vaccinations can and do cause autism.We are not saying 'stop all vaccinations'. We are saying "Test these people for these serious damned disorders before you vaccinate, not after!"

They have a few good points but sadly the vast majority of what they say is simply not true.

[...] the dropping of the Asperger's label reflects an adaptation to current clinical procedure—it's simply a new label that won't cause any change in practice.

It's not a "label", just as Irritable Colon Syndrome isn't a label, it's a disease name and a diagnosis. I know technically it can be thought of as a "label", but it certainly doesn't help with the whole stigmatizing issue mental diseases have.

Is it just me, or is the article's digression about the relationship between autism, ADHD, and dyslexia really odd? Of course they remain identified as separate disorders--they're completely different disabilities, with different causes, effects, and treatments!

It's like writing about a manual of physical disabilities, "broken foot, stroke, and decapitation remain separate disabilities, even though they all can result in reduced mobility."

Actually no. ADHD, PDD NOS, and Asperger's have overlapping symptoms (for two of these, that is expected, since they are both on the Autism spectrum disorder). For instance, in a diagnosis report, it is usually spelled out why, on balance, one is diagnosed and not the other (or both). Likewise, some sufferers of dyslexia also have problems maintaining focus. The point is that although they are distinct, they also overlap in their symptoms, so it is a matter of good clinical experience to sort that out.

That is also why it is not uncommon to find someone with Asperger's is also impulsive and might suffer from some form of dyslexia as well.

In Europe, or at least in the Netherlands, this overlap is acknowledged and, indeed, the variety of behaviour associated with single name syndromes is acknowledged (PDD NOS, for instance is a bit of catch-all diagnosis, so the behavioural differences from person to person can be absolutely huge), and the treatment is tailored to the behaviour of the individual.

I would guess that the hope would be that by expanding definitions, clinicians get more freedom to offer appropriate treatments by bringing all current treatments under a single classification. So, some who, though having PDD NOS behaves a little closer to typical Asperger's might be offered treatment closer to that offered to Asperger's, while previously that might not have been possible due to policy or insurance reasons.